The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.

Research needs to get moving for people with this illness now – and while advocates work so hard to push for appropriate levels of funding for ME/CFS with government agencies and lobbying – we can also make huge gains in research by donating! Globally, and together we can keep quality research programs going and invest in new projects. We’ve done that so far, and we can keep on investing in our future. Donations of all sizes are helping CII push forward with their program. We are so grateful for the support our community has given to these fantastic researchers – we need them on the case!

There is a shocking lack of good research into ME/CFS, where funding has been akin to a wasteland. In clinical care settings around the world patients are also floundering in a similar wasteland. Great research comes at a very large cost and ME/CFS research needs all the help it can get. There are no FDA approved treatments for this illness!

“ME/CFS is a global problem that we need to address – it robs people of the most productive years of their lives, it causes immunological dysfunction, profound fatigue, cognitive dysfunction. It really destroys peoples’ lives. It is underappreciated, it is underfunded, and with your support we hope to find solutions to this crippling problem”. ~Dr. Ian Lipkin

Having these world class researchers involved with ME/CFS research is groundbreaking in itself for the ME/CFS field of science and we applaud their commitment to this illness. CII staff have even donated their time to work on some ME/CFS studies!

These researchers are constantly building on their current program of work, are collaborative and known creative problem solvers: just look at their exceptional work in this article ‘Hunting down the cause of ME/CFS and & other challenging disorders’ by Simon McGrath. They are keen to start working on biomarker validation studies and develop an ME Center of Excellence! This team has strong ambitions and an equally strong ability to achieve these and have committed a significant percentage of their resources at CII into an ME/CFS program of research. In fact, Dr. Lipkin recently stated that he believes that we can solve ME/CFS in 3 to 5 years provided the resources are made available, see Cort Johnson’s impressive article about Dr. Lipkin’s talk at a recent Simmaron Research event.VircapSeq – VERT test, a 51 cytokine and chemokine immunoassay panel, metabolomics and proteomics.

Current program of ME/CFS researchAnalysis and Testing
The researchers are working on figuring out one of the central problems in ME/CFS: “heterogeneity”. This basically means there are probably many different subgroups of patients, some of who are likely to have different diseases, all caught under the current ME/CFS umbrella. The team are working with 5 different ME/CFS specialist clinicians at different sites across the US, along with other US researchers. They hope that the foundation they develop for a Center of Excellence in ME will ultimately have a global component.

They are implementing cutting edge technology and science looking into pathogen discovery; immune signatures; gene expression and variants; antibodies to viruses, bacteria and fungi that lead to autoimmune type of responses as well as phage approaches for anti-pathogen antibodies. Other high-tech approaches, some of which where developed by Dr. Lipkin and his lab include, MassTag PCR – High throughput sequencing, the new VircapSeq – VERT test, a 51 cytokine and chemokine immunoassay panel, metabolomics and proteomics.

They are investigating the oral pharyngeal (mouth and throat) and gut microbiome, spinal fluid and analysing gene expression. This is a phenomenal amount of work involving many people with carefully characterized cohorts from the ME/CFS expert clinicians that they collaborate with. The programme entails a huge amount of investigation and discovery. The research will help reveal the molecular detail of what might be going wrong for people with ME/CFS.

CohortsPure Pathogen Discovery Projects

National Institutes of Health/NIAID 150 cases, 150 controls: blinded multisite viral analysis (XMRV/pLMV)Samples still banked, able to be used.

National Institutes of Health/NINDS/Microbe Discovery Project (in progress) 125 cases, 125 matched controls: sample collection for microbiome and immunity, blood, stool and saliva at 4 time points; pathogen discovery analysis; foundation for establishment of Center of Excellence for ME. Collection has been funded through NINDS and donations as well as heavily subsidized by CII.

$5 million is needed for tests and analysis for this very large, extensive Microbiome/Immunity study!See more

i dont think patients should be funding studies like these. we should only be funding small studies, about things that we know will work, to prove that they do. so that we can get certain treatments approved and pilot larger studies and show where funding should go.

when dealing with microbes, there are two approaches.
1) find the specific one and treat it. (this approach)
2) use a general treatment.

when using a general treatment that addresses all microbes, there are many things you can do. lets find it!

two examples that i can give, is low dose antigen, low dose immunotherapy, which desensitizes the immune system's response to microbes and gets rid of symptoms, and seems promising. another example is synthetic fecal transplant in pill form, kinda like a super probiotic called repoopulate. this will fix your gut microbiology. http://www.thewhig.com/2016/01/20/c-difficile-project-receives-funding

i dont know how good or relevant the examples i gave are, but im thinking to myself, why not just wait until repoopulate comes out, take it, and cure yourself of all kinds of diseases, including gut related me/cfs, if there is such a thing.

if the government can fund a study like this, thats great! but i think there are better and cheaper studies we can fund, studies that noone else will.

i dont know how good or relevant the examples i gave are, but im thinking to myself, why not just wait until repoopulate comes out, take it, and cure yourself of all kinds of diseases, including gut related me/cfs, if there is such a thing.

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Because that approach would tell us nothing about what is actually happening, and it would not help patients in getting access to treatments shown to actually work for our specific disease.

I don´t think the two approaches are incompatible, @markiz2001 - it´s not going to take 5 million to fund a study where you give fecal transplant pills to some ME patients and see if they buck up a bit.

I don´t think the LDA is a good example of the latter approach, as, as far as I understand, the therapy is specific to each patient, i.e. a Lyme patient gets Lyme antigens and so on.

I also personal feel that a large proportion of ME patients have not had thorough brain imaging in the form of PET and SPECT scans....which does us no good as we chase around or body cavity looking for clues....

I believe that GUT is a major factor, as well as the vagus nerve, but that being said an encephalopathy though likely mild in many cases needs be investigated thoroughly..

Really interesting the talk in Sweden. I think we need to do everything to get enough funding for this group. $5 million seems like a lot but in the past there were some big donations which can arrive also now, maybe also NIH can put something for them. Small patients donations can motivate bigger donors.

I also think that Lipkin is able to bring money from other sources. But also what is necessary that the patients community make donations to keep these researchers motivated. Also it is easier to ask a big donor, fondation or NIH about money if you already have a part of the budget which you need.

Hi @Justin30
CFI is a Hutchins Family Foundation initiative and they have funded work done by CII Lipkin/Hornig. Here is CFI website http://cfinitiative.org/
The cohorts have come from USA Specialist doctors.
Edit: It has been a while since I went over this - but it is my understanding that CCC and Fukuda is used. My memory recalls something about the De Paul questionnaire being mentioned. I will look into this to make sure if that is correct.